Role of the primary healthcare providers in sickle cell disease management: a scoping review.

Abstract

The primary healthcare (PHC) system is essential for facilitating adherence to care practices among patients with sickle cell disease (SCD). While the PHC system is being strengthened widely, effective disease management is often seen as compromised. This review emphasizes the pivotal role of primary healthcare providers (PHPs) in facilitating comprehensive SCD care services through culturally competent screening, counselling and long-term disease management within the patient’s immediate social and geographic environment. The population-concept-context (PCC) framework was applied to identify literature on the PHPs’ roles and responsibilities in SCD management among patients with SCD in a PHC setting. This scoping review includes primary research and review articles retrieved from open-access databases, including PubMed, ScienceDirect, Epistemonikos and Google Scholar search engine, from the beginning date of each database to 3rd June 2025. The data extracted from selected studies were synthesized using a descriptive qualitative approach. Out of a total of 825 retrieved research articles, 13 studies qualified to be part of the current review. The results demonstrate that PHPs are central to community genetics, particularly in the management of SCD. Their involvement in screening, counselling, crisis management, prophylaxis, treatment and care coordination is vital for the successful implementation of genetic health interventions at the primary care level. The synthesis suggests that trained PHPs, when supported with proper infrastructure, guidelines and referral linkages, are well-positioned to deliver core components of SCD comprehensive care.